by Penney Cowan, Executive Director, ACPA

1

SEPTEMBER 2011

I N S I D E2 Living Well with Less

4 When Chronic PainHurts Your Wallet

5 Get Help withFinancial Issues

6 Adjusting YourFinancial Future

7 Medical Briefs

8 Economic Casualtiesof War

9 Insomnia and ChronicPain in Adolescents

10 ACPA Updates andNew Groups

11 Essay

12 Book Review

13 Members’ Forum

14 Tributes

The Financial Costs of Pain

The Institute of Medicine recentlypublished the report RelievingPain in America: A Blueprint

for Transforming Prevention, Care,Education, and Research. One of thefindings that many will find shockingis the financial cost of pain.

The report states that at least 116 million U.S. adults are burdened bychronic pain. The annual cost to thenational economy associated withchronic pain is estimated to be $560 to $635 billion. That is more than heartdisease, cancer, and diabetes combined!(This estimate includes the cost ofhealth care for those with pain and the cost of lost productivity attributedto pain.)

We are all aware of the impact painhas on our bodies. We also know thatpain can have direct effect on our family and friends. Pain can isolate us from those who mean the most tous, the people we look to for support,encouragement, and understanding. But pain can also affect our financialhealth, which becomes a contributingfactor to how well we are able to copewith the many burdens and limitationspain places on us.

Losing Gainful EmploymentThose who were working when painentered their lives experienced a majorshift in status and lifestyle. It is oftendifficult if not impossible to continue

working because of the pain. For many,their jobs provide health insurancealong with a regular paycheck. Withlimited ability to earn a living, andhealth coverage uncertain, there can be significant changes in our access tothe things we need most: health care,food, and shelter.

When we are no longer able to havesteady employment, we might look todisability to help with expenses. Butobtaining and retaining disability isnot an easy task and can take a longtime. While we are waiting, we can runout of money for car payments, housepayments, or rent. Far too often, families break up under the emotional,financial, and physical burdens of having a spouse with chronic pain.

What is the final cost of all these losses? Often it is more than anyone is willing to pay or can afford.

Join Us onFacebook

This issue of the ACPA Chronicle is funded by

C O N T I N U E D O N P A G E 5 . . .September is Pain Awareness Month. See our website for related news.

Living Well with Less: Budgeting for Chronic Pain

People often speak of the emotionalor physical “cost” of having chronic pain—but the financial

cost is real too, and it can be devastating.

“It’s very expensive to be ill,” says Missy Oesterheld, an ACPA facilitator in Fredericksburg, Virginia. Even withinsurance, her out-of-pocket costs addup. “I take 10 medications every day,”Oesterheld says, noting that eight ofthose are absolutely necessary and theothers—a muscle relaxer and a painmedication—are not things she’d willingly go without. And some paintreatments are not eligible for insurance.“Massage therapy seems to help me themost, so I do that two or three times amonth,” Oesterheld explains, “but that’san extra $200 a month.” Even the priceof books and medical journals that she buys to educate herself about newresearch and treatment opportunitiestake a financial toll.

Practical, Inexpensive SolutionsBut there are also inexpensive therapiesthat can be very helpful. “I swear by myheating pad and my electric blanket,”says Oesterheld. “I have extras that I keep at work.” She also routinely puts on warm sweaters and socks to keep herjoints warm at night when the tempera-ture drops. She says she gets strangelooks sometimes, but isn’t discouraged.“It’s 100 degrees in Virginia today, andI’m at my desk with my heating pad!”

She uses Epsom salts to soothe her muscles, peppermint to settle her stomach, and lavender aromatherapy to help her sleep. “You can get a big bag of Epsom salts in the drug store for about $5,” Oesterheld points out.

Judy Gober, a longtime ACPA facilitatorfrom eastern Pennsylvania, also hasrelied on low-tech aids to cope withchronic pain. “You can buy risers foryour bed’s feet to make it easier to get

in and out of—they’re about $10,” shesays. “I have a $20 knee brace from thedrug store; I think it’s helped me put off having knee surgery and allows meto go longer between cortisone shots.”

Gober recommends a mechanical “grabber” to extend one’s reach withoutstretching, a booster for the home toiletseat to ease the stress on your back andknees, and small stepstools for getting inand out of high vehicles. “My roommateat the ACPA Advisory Board meeting had a microwaveable hot/cold pack she traveled with,” Gober says. “If you’reat a restaurant you can ask them to heatit up for you.”

Finding the Medical Care You NeedWhen it comes to chronic pain relief, a heating pad won’t do everything.Professional medical care is essential.

ACPA facilitator Terry Witty, who livesin New Port Richey near Clearwater,Florida, has learned to find her waythrough many benefit programs available to underinsured people. She’s also learned that what’s availablecan change drastically from one state’sprograms to another.

“I qualified for Medicaid in Michigan,but when my disability application wasapproved I moved to Florida to be nearfamily. Florida is like a different world,”she says. Witty learned that as a single-person household she couldn’t getMedicaid in her new home. Undaunted,she researched low-cost care and found afree medical clinic nearby. “Through theclinic I got approved for a program thathelped pay for prescription drugs,” shesays. “When I got my own apartment, I moved to a different county and therules were totally different,” she says.“Here all my medications are free, but I can’t see a specialist.”

“You have to do your own research,”Witty says. “I’ve always gone to the doctor with a list in my hand.”

She’s found many low-cost medical programs on the Internet. “I search for‘free health clinic’ or ‘prescription help,’ ”Witty explains. “And I don’t give up.”

Discounted care is useful whether youhave health insurance or not. Oesterheldhas medical insurance that covers someof her expenses, but she also takesadvantage of discounts when they’reavailable. When she started on a newarthritis medication, her rheumatologisthelped her enroll in the pharmaceuticalcompany’s program that gave her discounted medication for a year. Gober buys one of her most expensivemedications from a Canadian pharmacyservice—at a cost savings of more than$4,000 a year.

Witty has had to forgo some treatmentsbecause she doesn’t have the insuranceto cover them. Only recently was sheable to get fibromyalgia medicationthrough the clinic and is looking forward to qualifying for Medicare in November 2011. “I have a musclerelaxant for cramping, but it knocks me out,” she says. “I still have muscleaches and I can’t concentrate. But it’s all I can do for now.”

Insurance ConcernsOver the years, Gober has learned to tread carefully when navigating insurance systems. When her pain problems started, she tried to keep working. “I waited two years to apply for social security disability payments,and then I only qualified for the mini-mum because I hadn’t paid enough in,”Gober explains. The time she took offwork to recover from surgeries hadimpacted her earnings.

“A lot of people go through this,” sheexplains, “There are times when you’renot well enough to work, but not badenough to not work!” She also had touse some of her benefit to pay back alump sum distribution from her short-term disability insurance.

2

by Erin Kelly

| TOP |C O N T I N U E D O N P A G E 3 . . .

3

Health insurance is a tricky situation for people with chronic pain. “If you use a lot of medical services, you reallymight need to spend more on a healthcare plan,” Gober says. The Medicare co-insurance plan that she chose has ahigh monthly fee but covers doctor visitscompletely and includes a generous prescription plan. “It ends up that I’mbetter off with the more expensive plan,”Gober says. “Last year I hit the ‘donuthole’ in July,” she says, referring to theMedicare benefit limit for prescriptiondrugs. “This year, so far, I’m okay.”

Gober learned a few other tricks alongthe way. When her husband retired, they weren’t old enough to qualify for Medicare and they bought COBRA insurance. “It was ungodly expensive!”Gober says, “but it turns out that if you move from COBRA to private insurance you can get coverage for preexisting conditions.”

And it’s not just health insurance thatrequires careful planning. Because of herhealth history, Gober and her husbandhad assumed that he would likely outlive her. “When we bought our house,we got life insurance on me that wouldhave paid off the mortgage,” she says.“As it turned out, he was the one who

passed away first.” Gober faced theprospect of giving up her home after herhusband’s death, but was able to workout a solution when her son and hisfamily decided to share the home withher. “You just never know,” she says.

Enjoying Life with Less Gober raised a family while managingher chronic pain. But giving up herincome forced her to become creativeabout entertaining—and feeding—herfamily of three boys. “I became a masterat stretching a dollar and finding waysto do things for less,” she says.

Oesterheld is lucky enough to be able tocontinue her full-time job, but she hasmade lifestyle changes because of thecost of chronic pain. She used to enjoy“retail therapy” as a way to cheer herselfup on a bad day, but shopping stoppedbeing fun when she couldn’t afford theextra purchases or the stress on herbody. “Spending hours at the mall justdoesn’t work for me,” she explains.“Communicating that to my family hasbeen one of the hardest things to do,”she adds. “I’ve had to learn to say no.”

But Oesterheld points out that you don’tneed to spend money to make yourselfhappy. She suggests making a list of 10

things that make you happy. “Make thelist when you’re feeling good,” she says.These can be as simple as warm socks, a hot bath, spending time with your pet, or a peppermint candy. Then whenyou’re not feeling good, indulge in an item from the list.

Gober has developed a large repertoireof ideas for low-cost fun. “There are somany things you can do that don’t costmoney,” she says. When her childrenwere young, she scanned the newspapersand went to high school plays, Easteregg hunts, picnics in the park andSanta’s workshop events. They all hadlibrary cards. Adults can also seek outand enjoy these community activities.

“You have to be creative,” Gober says.“We had sleepovers, and the kids wouldwatch a movie or bake cookies. Thatdoesn’t cost much. You can have themmake water balloons; all you need is aone-dollar bag of balloons and a hose!”

“The smartest thing you can do is tohave friends with a pool,” Gober jokes.But she has tips for that lucky situationtoo. “Don’t take advantage of them,” shesays. “Bring your own towels and bringsnacks to share. Make sure you’ll getinvited back!”

The idea of using friends and relativesfor entertainment instead of movies andvideo games may be old-fashioned, butit’s not outdated. “All the things I didwith my kids I now do with my grand-children,” Gober says. “With my 3-year-old grandson, I take him for a walk and spend time with him. We catchlightning bugs and watch the moon.”

Whether you’re trying to entertain a fam-ily or just pay for your medication, thechallenges of living on a pain-limitedbudget can be discouraging. But theyalso can be solved with research, persist-ence, and creativity. And ACPA can helpyou find people who’ve faced the sameproblems and can share their solutions.

“There are so many things you can do that don’t cost money.”

| TOP |

C O N T I N U E D F R O M P A G E 2 . . .

4

When Pain Hurts Your Walletby Alison Conte, Editor, The Chronicle

Chronic pain doesn’t play fair. Not only is your body hurting, your energy depleted, and your emotional statefragile, this unwelcome guest may even have drained your

bank accounts.

Living with pain can result in bills for increased hospital anddoctors’ visits, medication, travel, physical therapy, mentalhealth counseling, rehabilitation programs, assistive devices, special beds, household help, and home health aides. Healthinsurance coverage can be insufficient, particularly when a diagnosis isn’t fully covered. You may have to pay directly foralternative medical treatments like acupuncture, special foodsand vitamins, or “experimental” procedures.

And on the income side, chronic pain can affect your ability towork at your chosen career. Giving up a job often means losingincome and health benefits.

But the financial impact of chronic pain must be approachedin much the same way as you approach the emotional andphysical aspects.

Just as you changed your life to manage your pain, you mayneed to change your life to adjust to new economic realities.And in the same way that you work with your healthcare teamto manage your pain, you must take an equally active role incontrolling your finances.

Get Help to Plan AheadThis means looking out for the long term, working with afinancial planner, your insurance company, employers, and perhaps a debt counselor. It is essential to organize yourfinances, spending, and budgeting responsibly. (See page 6for more on this subject.)

“You may have to accept a reality of life with less money,” saidJennifer Christian, M.D., President of Webility Corporation andACPA board member. “Just as you are accepting a new reality of health, you will have to understand that your new normal is a different financial status from what you were used to.”

According to Dr. Christian, if your pain is due to a progressivecondition—one that will increasingly limit your income orrequire additional expenses—you need to do some planning forthe future.

Keeping a JobIf chronic pain has made it impossible for you to keep a jobthat has demanding physical requirements, don’t assume you’llbe able to quit and live on disability benefits. According to Dr. Christian, only half the workforce has disability coveragethrough their work.

“The amount you are paid on disability is related to how muchyou’ve paid into it. Sometimes if you have chronic pain but not objective evidence, it can be hard to get and keep disabilitybenefits,” said Dr. Christian. “Policies often will cover you forjust two years. You may not be entitled to receive full benefits if you have the ability to do another job.”

Dr. Christian recommends you “fight like a tiger” to keep your job, seeking accommodations, fewer hours, or less travel.She suggests you talk with your employer about how you cancontribute without aggravating your pain or stamina. “Beingunemployed leads to worse problems, emotionally, socially, and psychologically,” she said. “If you will have a progressiveloss of function, develop a strategy in concert with youremployer as to what the future is going to hold.”

Living FrugallyIf a larger share of your income is going to medical bills andmedication, you will want to find ways to live frugally. Canyour family get along with one car and use public transporta-tion occasionally?

Living Frugal Tips at www.livingfrugaltips.com/ has more suggestions for making the most of your money.

You can find financial assistance resources through the ACPA,at www.theacpa.org/57/LifeResources.aspx.

| TOP |

5

Some other ways to add fun and purpose to your life without emptying your wallet.

❋ Borrow books, movies, and music from your local library.

❋ When you are able to get out, go to museums during the

discount days and movies during bargain matinee showings.

❋ Attend free community events and college lectures.

❋ Go people watching over a picnic in your local park.

❋ Shop garage sales and resale stores for bargains.

❋ Give homemade crafts and baked goods as gifts.

❋ Instead of buying new, reuse, recycle, and repurpose –

it’s good for you and the environment!

❋ Trade services, like babysitting and gardening, with

neighbors and friends.

The Financial Costs of Pain C O N T I N U E D F R O M P A G E 1 . . .

Older adults who have worked their entire lives and saved for a comfortable retirementfall on hard times when pain invades what they thought would be their “golden years.”The golden years become tarnished and everyday life is very challenging.

Savings dwindle away because of high medical costs that Medicare does not cover.Prescription costs wipe out a nest egg. Plans to travel, relocate, or simply live comfort-ably and afford everyday things vanish in an instant because of the tremendous pressure pain exerts on financial security. All dreams of enjoying the fruits of a life oflabor, the harvests of a lifetime of hard work, seems to be gone all because of pain.

But just as we’ve learned to take an active role in our medical treatment, learned toadjust our emotions, stamina, and attitudes in light of living with pain, we can pro-actively cope with the financial impact of pain.

In this issue we are going to look at preparing for a financial future that is affected bypain. We will offer resources for those with financial problems and share stories fromthose who have survived economic woes, so you can get the most out of your life, evenwhen money is tight.

(ACPA will review Relieving Pain in America: A Blueprint for Transforming Prevention,Care, Education, and Research in a future issue of The Chronicle. To read it now, visithttp://www.iom.edu/Reports/2011/Relieving-Pain-in-America-A-Blueprint-for-Transforming-Prevention-Care-Education-Research.aspx.)

California Help Center at theDepartment of Managed Health Careadvocates for California residentsregarding health care benefits, healthplans and member complaints.http://www.hmohelp.ca.gov/default.aspx

Center for Medicare Advocacy,Inc. provides education, advocacy,and legal assistance to help older people and people with disabilitiesobtain Medicare and necessary health care. http://www.medicareadvocacy.org/

Families USA is dedicated to high-quality, affordable health care for all Americans and is an effectivevoice for health care consumers.http://www.familiesusa.org/

Needy Meds is a non-profit thathelps people who cannot afford medicine or health care costs; anonymous and free of charge.http://www.needymeds.org/

Patient Advocate Foundationprovides mediation and arbitrationservices for medical debt crises, insur-ance access, and employment issues.http://www.patientadvocate.org/

RxAssist is a pharmaceutical accessinformation center by Volunteers inHealth Care (VIH), a national resourcecenter for safety net organizations.http://www.rxassist.org/

Partnership for PrescriptionAssistance helps people without prescription drug coverage get free orlow-cost medicines through prescrip-tion medicine assistance programs.http://www.pparx.org/

Prescription Drug AssistancePrograms (American Cancer Society)http://www.cancer.org/Treatment/index

Resources for Help with Money Issues

| TOP |

6

Editor’s Note: Living with chronic pain can often mean livingwith less: less energy, less stamina, less certainty, and lessmoney. We asked a financial expert to discuss how people withpain can better manage their finances. (The ACPA does notendorse nor recommend specific financial strategies.)

It’s impossible to say what the future has in store for anyone,but preparing in advance for a potential loss in incomecould help ensure financial stability. Before preparing for

the future, it’s important to assess current finances.

The first step is determining a budget. Take a complete accounting of current income, current expenses, and debt.

❋ Include all income sources, including child support and disability payments.

❋ Take into account all expenses, including gifts, meals out, and even lottery tickets if purchased regularly.

❋ Evaluate your debt, including secured debt payments like a mortgage or car payment, and unsecured debt paymentslike medical bills and credit cards.

This accounting will provide a good idea of where money isgoing each month and will help determine if there’s a budgetshortfall.

Once current income and expenses are determined, the nextstep is examining how money is being spent each month and if there are areas where you could cut back. Ask yourself whatexpenses would need to be eliminated if you had to live on areduced income.

Planning for EmergenciesIf it is likely that your income will be reduced in the future,start cutting expenses now and put the money aside to buildup an emergency fund. This emergency fund will help when an unexpected expense comes up, like car or home repairs ormedical bills. Set aside $50 a month and in 12 months you will have saved $600, which could provide some cushion forunexpected expenses.

When anticipating an income reduction down the road, it’simportant to eliminate and stop accumulating unsecured debt.You can get details about your debts by requesting a creditreport. Everyone is entitled to three free credit reports annually(one from each credit bureau). However, it’s important to getthese reports from www.annualcreditreport.com. Here, thereport will be provided for free and there will be no offers fora credit monitoring service, which charges a monthly fee. Onceyou have verified your debt, the next step is coming up with aplan to pay it off.

Dealing with DebtThere are several options for dealing with unsecured debt. Ifyou are current on payments, keep paying and try to pay extraeach month to get out of debt faster. Anyone who is runningbehind should contact the creditor and explain the situation.In some cases, the creditor will work with customers to get payments back on track. If the credit card debt is too much to handle alone, consider professional financial counseling.

The National Foundation for Credit Counseling provides adirectory of reputable, non-profit credit counseling agencies thathelp consumers figure out their options for dealing with debt.If appropriate, the counselor may recommend a debt manage-ment plan (DMP) to help pay off unsecured debt. The DMP,offered through a credit counseling agency, will set a five-yearschedule of monthly payments to pay off the debt. Before signing you up for a DMP, a counselor will first do a budgetanalysis and provide an action plan, which will detail specificmoney management suggestions.

Adjusting Your Financial Futureby Heather Murray

| TOP |C O N T I N U E D O N P A G E 7 . . .

7

Be Cautious with Medical Credit CardsRecently, several large banks began issuing medical credit cardsto pay for procedures that are not usually covered by insurance.Companies market the cards to doctors and other health careprofessionals as another payment option. However, these cardsare coming under scrutiny by patient advocates. According tocritics, some people are led to believe they are signing up for apayment plan with their provider. In some cases, the potentialimpact on credit history and score is not even discussed. Fulldisclosure might lead people to reject this option if they knewthey were signing up for a credit card with possible interest,fees, and penalties.

It’s important to understand all options when dealing withdebt and educate yourself to make an informed financial decision.

Heather Murray is Manager of Education and Resource

Development for Advantage Credit Counseling Service

(dba Consumer Credit Counseling Service). For more information,

visit www.advantageccs.org.

Resources❋ Annual Credit Report

www.annualcreditreport.com

❋ Consumer Credit Counseling Servicewww.cccsstl.org/, 888-656-2227

❋ American Debt Counselingwww.americandebtcounseling.org/888-DEBT-USA (888-332-8872)

❋ National Foundation for Credit Counselingwww.nfcc.com

❋ Federal Trade Commission, Bureau of Consumer Protectionwww.ftc.gov/bcp/index.html

Acetaminophen Panel Offers RecommendationsThe FDA convened a two-day joint panel in May of pediatricand nonprescription drugs advisory committees. The joint advisory panel recommended that the FDA consider:

❋ standardizing all solid single-ingredient oral acetaminophen pediatric products to a single concentration, and

❋ expanding the dosing information for acetaminophen to children as young as 6 months.

The industry recently moved voluntarily to a single liquid concentration for children’s products up to age 12 but does not believe a standard solid concentration is needed (1 ’OTCIndustry Standardizes Pediatric Liquid AcetaminophenConcentration,’ The Tan Sheet May 9, 2011).

The committees also recommended weight-based dosing information, which is considered more accurate, in addition to the age-based guidelines currently on labels. (2 ‘Acetaminophen Panel To Mull Expanded Dosing, StandardSolid Concentration,’ The Tan Sheet May 16, 2011).

Finally, the panel agreed that labeling for children under 2years should include fever-reducing claims, but they could notagree to include any analgesic claims.

The Consumer Healthcare Products Association “strongly urgesthe FDA to include relief of pain as an indication on the OTClabel,” because acetaminophen is “a mainstay for the treatmentof pain in children under 2 years.”

Complementary and Alternative Therapy NewsBecause chronic pain can be resistant to many medical treat-ments, people with chronic pain often turn to Complementaryand Alternative Medicine (CAM) for relief. For fibromyalgiapain in particular, people try acupuncture, massage, tai chi,dietary supplements, and other approaches.

The National Center for Complementary and AlternativeMedicine (NCCAM) at the National Institutes of Health hasdeveloped the NCCAM Clinical Digest to provide evidence-based information on CAM, including scientific literaturesearches, summaries of NCCAM-funded research, and fact sheets.

You can subscribe to the NCCAM Clinical Digest athttp://nccam.nih.gov/health/providers/digest/.

Medical Briefs

| TOP |

C O N T I N U E D F R O M P A G E 6 . . .

8

Economic Casualties of Warby Jani Larsen

Moreover, they may never get the compensation they deserve.

Supporting VeteransMany non-profits are willing to assist veterans with shelter, food, and clothing. There are a few independentcontractors who adapt houses to thespecial needs of veterans. (T.J. Cantwell,of Rebuilding Together is one of them: www.rebuildingtogether.org/)

Despite this help, veterans pay tens of thousands of dollars for medical specialists outside the VA system, pay for travel and shelter during hospital visits, and pay more to adapt their homes and cars to their new disabilities.

However, with the national deficit, recession, and unemployment rate,many civilians are finding it tough tostay ahead. Disabled veterans are livingon a fixed income, dealing with stress,anxiety, physical, and mental issues.Was this their dream when they decided to fight valiantly for ournation against terrorism?

Penney Cowan, founder of the ACPA,developed Veterans in Pain (VIP) tohelp veterans learn how to live withchronic pain. It is just one small thingone organization is doing to make ahuge impact on our nations’ mostprized resource.

What can you do? Start your research to search for and support organizationsthat assist veterans. Even one personcan do so much for the veterans whosacrificed their health and lives for us.

Donate to the VIP Program by going towww.causes.com/causes/572744#

Injured soldiers are coming home tothe United States alive, more oftentoday than during any of the past

wars. That is the good news.

But 185,000 injured soldiers who served in Iraq and Afghanistan need treatment,help with recovery, and re-training, whichwill cost billions of dollars. This numberis predicted to jump to 700,000 injuredsoldiers by the time the war ends.

According to the Department of VeteransAdministration, nearly half of U.S. soldiers who were involved with theAfghanistan and Gulf wars are beingtreated for complaints of pain.

When predicting the cost of this war, the U.S. government projected a shortduration and relatively few injuries, and was not prepared for how long and deep this war would go. The militaryis assigning longer tours, allowing lesstime for recovery, and rushing newtroops to the front lines with abbreviatedtraining, resulting in more injuries.

A Larger Price to Pay Post-Traumatic Stress Disorder is the leading cause of homelessness in veteranstoday. Traumatic brain injuries are topping out at 180,000 troops reportedand a predicted 320,000 in total. Whenadjusting to a new life with pain andinjuries, a lifestyle that was not expectedor planned, these troops must wonder ifthey’ve truly come home. An alarmingnumber of soldiers have not left the battle ground. In their nightmares anddaydreams they can still feel, see, andhear the unmentionable, profound, andlife-changing events that occurred right in front of them.

Unable to earn a living or relate to others, they are now losing their homesand families. They have already lost thelife they once knew.

Now, veterans are fighting to get coveragefor better treatment. The president hasrequested money out of the 2012 budgetfor this ever-expanding population to getthe compensation they were promised.

| TOP |

Sleep difficulties are very common in individuals withchronic pain, occurring in children, adolescents, andadults across the life span (Roth-Isigkeit, Thyen et al. 2005;

Tang, Wright et al. 2007). Most of these sleep complaints areabout difficulties falling asleep, waking up during the night or too early in the morning, and feeling excessively sleepy during the day. These types of complaints are consistent withdefinitions of insomnia.

Problems with sleep are not benign. There are far-reachingadverse effects of inadequate sleep and untreated sleep disor-ders on health, mood, and cognitive and physical performance.In individuals with chronic pain, the combined effects of painand poor sleep further diminish overall quality of life (Palermoand Kiska 2005). Importantly, research has also demonstratedconnections between pain and sleep such that insufficient sleepcan increase pain sensitivity, meaning that individuals who aresleep deprived may experience pain at higher levels.

Identifying Sleep ProblemsWe were interested in understanding insomnia symptoms inadolescents with chronic pain in order to guide our futureefforts at developing interventions that may address sleep problems. Adolescence is a particularly important time duringwhich to consider sleep problems because many changes arealready occurring in the sleep-wake cycle associated withadvancing puberty.

In this study published in Pain in 2011 (Palermo, Wilson et al.2011), we examined sleep quality, insomnia symptoms, and several possible behavioral and psychosocial predictors of sleep problems (pain, depression, and arousal at bedtime) in 59 adolescents with chronic pain and 56 otherwise healthy adolescents, ages 12 to 18 years.

Our findings demonstrated that over half of the cohort of adolescents with chronic pain (54.2 percent) reported insomniasymptoms compared to 19.6 percent of healthy adolescents. Inaddition, adolescents with chronic pain reported poorer sleepquality and higher levels of cognitive and somatic arousal atbedtime compared to their healthy peers.

Causes of Poor Sleep QualityThere were several factors that predicted having insomniasymptoms including having chronic pain and higher levels of cognitive arousal (e.g., racing thoughts, worry, anxiety) at bed-time. Interestingly, severity of pain did not predict insomnia.These findings suggested to us that although pain may initiallyinterfere with sleep, over time, it is likely that other behavioralfactors play a role in the persistence of the sleep problem.

Given the magnitude of the problem with sleep and the potential negative consequences of insomnia on adolescents’

ability to cope with chronic pain, sleep should be an important priority in the care plan of those with chronic pain.

Additional research is needed to further guide assessment andtreatment efforts with individuals with chronic pain; however,sleep should be evaluated in all individuals with chronic pain.Insomnia is a modifiable problem; current recommendationsby the American Academy of Sleep Medicine (AASM) advise theuse of cognitive-behavioral therapy instead of sleep medicationsfor treatment of adult insomnia.

Cognitive-behavioral therapy has already been used effectivelyin adults with chronic pain and insomnia. Studies have shownthat not only do insomnia symptoms improve but that pain is also reduced in individuals receiving cognitive-behavioralinsomnia treatment (Vitiello, Rybarczyk et al. 2009). Sleep intervention may have substantial benefits for individuals with chronic pain.

ReferencesPalermo, T. M. and R. Kiska (2005). “Subjective sleep disturbances in adolescents with chronic pain: relationship to daily functioning and quality of life.” J Pain 6(3): 201-207.

Palermo, T. M., A. C. Wilson, et al. (2011). “Behavioral and psychosocial factorsassociated with insomnia in adolescents with chronic pain” Pain

Roth-Isigkeit, A., U. Thyen, et al. (2005). “Pain among children and adolescents:Restrictions in daily living and triggering factors.” Pediatrics 115(2): 152-162.

Tang, N. K., K. J. Wright, et al. (2007). “Prevalence and correlates of clinicalinsomnia co-occurring with chronic back pain.” J Sleep Res 16(1): 85-95.

Vitiello, M. V., B. Rybarczyk, et al. (2009). “Cognitive behavioral therapy forinsomnia improves sleep and decreases pain in older adults with co-morbidinsomnia and osteoarthritis.” J Clin Sleep Med 5(4): 355-362. 

9

Insomnia and Chronic Pain in Adolescentsby Tonya Palermo, PhD, University of Washington School of Medicine

| TOP |

10

ACPA Updates

Do You Use the Arts to Manage Pain?A new ACPA project, The Art of PainManagement, will show how people withpain can use the creative arts in their painmanagement regimen.

Meredith Snow, M.S., ATR-BC, LCAT, is aboard-certified art therapist and teacher,currently working at Stanford Hospital and Clinics in California in their Art forHealth program. She has agreed to workwith Penney Cowan, executive director of the ACPA, to develop a manual abouthow to use art as a creative outlet to copewith pain.

“We are always looking to expand the range of techniques that people can use to manage their pain,” said Penney. “Usingthe creative expression of art is a wonderfuldistraction from pain with which you canalso release the emotions, create somethingbeautiful, and expand your horizons.”

Meredith and Penney would like to includetestimonials from people who have usedpainting, music, photography, dance, poetryor prose, singing, sculpture, collage, or eventhe culinary and horticultural arts as partof pain management. Send your story andcontact information to The ACPA, PO Box850, Rocklin, CA 95677 or fax 916-632-3208or email: ACPA@pacbell.net. Put “Art ofPain Management” on the envelope or inthe subject line.

“As an art facilitator, I’ve helped people create imagery that expresses how they feel,forming a connection between the emotionsof pain and a visual representation. Theyoften can’t share this any other way,” saidMeredith. “This helps to combat the depres-sion that can accompany chronic pain.”

Learning a new task, like watercolor paint-ing, also forges new neural pathways in thebrain, she explained. “These are like exercis-es to develop the elasticity of the brain thatmay be neglected if your activities havebeen restricted by pain,” she said.

International Integrative MedicineDay Spreads AwarenessInternational Integrative Medicine Day, January 23, 2012, has been established to inspire worldwide dialog, education, collaboration, research initiatives, and programming about integrative medicine.Integrative medicine is healthcare that ispatient-centered, holistic, economically and environmentally sustainable, and conscious of integrating different globalmedical systems.

To learn more, visit the IIM Day website athttp://sites.google.com/site/iimday123.

Donate through the Combined Federal Campaign (CFC)If you work for the federal government and

plan to donate to the CFC in Fall 2011, you

can designate your CFC gift to the ACPA.

Just enter our name and code—10549—on

your form. Your support will help many

people.

Know Your Dose of AcetaminophenThe ACPA is participating in the Know YourDose campaign on the appropriate use ofmedications that contain acetaminophen.

Acetaminophen is found in more than 600different prescription and over-the-countermedicines, including pain relievers, feverreducers, and sleep aids as well as cough,cold, and allergy medicines. On prescriptionlabels, acetaminophen is sometimes listedas “APAP,” “acetam,” or other shortened versions of the word.

When used as directed, acetaminophen issafe and effective, but there is a limit tohow much you can take in one day. An overdose of acetaminophen can lead to liver damage.

Follow the labels of your medicines and never take two that contain acetaminophen at the same time. Visitwww.knowyourdose.org to view a list ofcommon medicines that contain acetamino-phen, label reading tips, and more.

Welcome to our newgroups and facilitators.

Art and Maureen Honegger(Family Group)

Antioch, CA

Megan LiniSan Diego, CA

Christal BallardJacksonville, FL

Cindy Ann BurgenerGreen Castle, PA

Thomas R. PotterHarrisburg, PA

Janet L. RuddockAlexandria, VA

Tammy TeerRichmond, VA

| TOP |

11

Wherever Two or More are Gathered

by Janet Ruddock, facilitator, Alexandria, Virginia region

It only takes two people to start a chronic pain support

group.

My new group began at a local department store when

I heard a friendly male voice behind me say, “I’ve been

told about women with red hair.”

Taken totally off guard, I swung around to encounter

an older gentleman impeccably turned out with an

engaging twinkle in his eyes. I don’t generally engage

in conversation with complete strangers, however, his

good humor was contagious. I replied, “Only good

things I hope!”

“Oh yes,” he continued, “Only the best. Please take

this as a compliment.” I was warmed by his words.

We went in separate directions, but as I continued

shopping, I saw him again in the shoe department.

“How is it,” he asked pleasantly, “that men come

into a store, accomplish their errand, and promptly

leave? You are barely halfway through the store

and still going strong.”

I responded, “Women browse their way through a

store. I have problem feet and need to return yet

another pair of shoes. Here I am in the shoe

department. I merely took the scenic route.”

“I have problem feet too!” he exclaimed. “It seems

like they are on fire all the time. At night I stick them

out of the covers. I try to explain this burning feeling

to my doctors but maybe I don’t describe it properly.

They call it neuropathic pain. I believe my medical

internist and podiatrist are doing their best but

nothing seems to stop the burning. I feel as if no

one quite understands the pain I feel day and night.”

His obvious yet controlled frustration felt almost

palpable. I so wanted to reach out to him.

“I understand perfectly” I assured him. “I have

generalized neuropathic pain. The burning sensation

exists at varying degrees daily throughout my entire

body. At times even a breeze triggers a “zinger” as if I

had stuck my finger into an electric socket unleashing a

static charge. Sheets rubbing on my legs can keep me

awake half the night.”

He responded with compassion for me but a sense of

relief. “I can't tell you how reassuring it is to find some-

one who truly understands this problem. Sometimes I

just feel so alone. Your symptoms sound far more severe

and you have my greatest sympathy. How ever do you

cope? I can just manage my painful feet. You look so

put together and good natured.”

My friend too looked and acted in every way a

perfectly carefree individual. To the casual observer

we appeared two healthy and happy people. In fact,

he suppressed a painful limp and my legs burned from

standing still too long.

Pain is often invisible. This can present difficulties for

a person with chronic pain. If you don't appear to be

in pain, other people, including the occasional doctor,

have difficulty acknowledging the extent of your pain.

Fifteen years of experience with a number of chronic

pain conditions has taught me to deal with the good

days as well as the bad. Fortunately over time, through

trial and error, various doctors have developed an

optimal treatment plan of pain management for me.

Chronic pain is not going away. You need to live with

it as best you can.

My new friend reacted to my “Chronic Pain 101” speech

with enthusiasm, clearly pleased to encounter someone

who could relate to his problem and exhibit such a

positive outlook. We plan to meet again soon.

Initiating a chronic pain support group can seem a

daunting task. However, as long as people like this

gentleman struggle alone with their pain, the need for

peer support exists. My friend and I have no way of

knowing where our first meeting in the mall may lead.

Our twosome may not appear to be a “group” at all,

but it’s a start.

| TOP |

12

Book Review

The Will to Walk: Journey of Recovery from Paralysis by Marjorie B. Holcombe

Review by Tara White, RN

The author of this book, Marjorie B. Holcombe, states that this book was written to help others, and that is just what it will do.

She is suffering from paralysis due to a severe case of transverse myelitis (inflammation of the spine), but anyonewith a physical disability who is determined to find a betterlife will be inspired by this book. Marjorie Holcombe displaysincredible courage in her struggle to regain her ability to walkand once again enjoy an active, outdoor life.

After a diagnosis of cancer, she suffers terrible burns from radiation, and then is mistakenly given toxic levels ofchemotherapy causing temporary hearing loss, paralysis of her legs, and severe weakening of her arms. She is then treated with massive doses of steroids that cause their ownsevere side effects. Lesions along her spine prevent her musclesfrom receiving messages from her nerves. Despite physical,occupational, and exercise therapies, Ms. Holcombe realizesvery little progress, and is told it could take years to recover, if she ever does.

Absolutely determined to walk again, the author seeks out alternative treatments. During a treatment of Chinese scalpacupuncture, she is told that by exercising her muscles 6 to 10hours a day, she can regain the use of her legs. Depleting hersavings, she hires a personal assistant and personal trainer andbegins the recommended rigorous program. Her devoted lifepartner designs equipment and restructures their whole hometo accommodate a hospital bed, then wheelchair, plus live-inhelp.

Emerging out of the chaos of early treatment, final diagnosis,and devastating prognosis, through the “fog of confusion” oftreatments and questions, she never loses her determination.Despite setbacks, she maintains steady progress. However, shealso begins a life of chronic pain from reawakened nerve fibersand muscle spasms. Realizing that anger is a “useless waste ofenergy,” she also knows that asking “why me” would only takeaway from the “all-consuming task of surviving.”

She describes it in a way we can all learn from: “Whereas onceI had aggressively attacked my days with zestful purpose, during the months of recovery I eased more and more into

inner stillness, sometimes feeling comfortable and natural in it,much as one might feel sitting satisfied in a warm sunny fieldof wild flowers. Energetic people often seemed so engaged intheir personal dramas as to be unaware of this other side oflife, of the quiet witnessing that invites another aspect of oursoul to emerge. Such quietness, an absorbing sinking into anewly emerging reality of self, becomes the rich soil for innertransformations at a very deep level, a level beyond the busy,aggressive, purposeful rational mind.”

She kept her life simple and limited her involvements.Distaining the label of courageous because it implied facing fear, she learned instead to accept present realities, “that one’s attitude toward situations determines the nature of the experience.” Included at the end of the book is her ownexercise program and many resources she utilized throughouther long road to recovery.

I was very impressed with the author’s perseverance despite herpoor prognosis. Most people would feel just bitter acceptance.However, Ms. Holcombe dug deep inside herself “to developnew strengths, gain new understanding.” She believed whole-heartedly in the Buddhist teaching: “Endurance is one of themost difficult disciplines, but it is to him who endures that the final victory comes.” She does indeed earn this final victory and is truly a very inspirational woman.

The Will to Walk: Journey of Recovery from Paralysis; author,

Marjorie B. Holcombe; Precious Sounds, 207 Pages, $18.55

ISBN 978-0-615-36264-9, www.thewilltowalk.com

“Endurance is one of the most difficult disciplines, but it is to him who endures that the final victory comes.”

| TOP |

13

k

Members’ ForumAn Essay to Mr. Pain

From time to time we share essays written by facilitators and

members of ACPA and of our support groups. Members of the Nevada

County ACPA support group wrote letters to “Mr. Pain” to describe

their everyday battles and successes.

Mr. Pain,

A year ago, you were winning. You were who I

was. My days and nights were measured by your

intensity. I spent an amazing amount of time and

money trying to get rid of you. You overwhelmed

me. You affected every area of my life. My daily

activities were halted, my relationships hindered,

and a feeling of sadness and hopelessness settled

over me. My world shrunk. Staying home was the

easiest thing to do. My life as I knew it was taken

from me. But, you didn’t win!

It seems there was always the faintest glimmer of

hope within me. That little spark was fanned into

flame and I won! I'm back—the me I used to be,

the real me. My family and friends hung in there

with me and encouraged me; my faith lifted me

up and I now know you will never win.

I say with the Scriptures, “The Lord is close to the

brokenhearted and saves those who are crushed

in spirit.”

(Psalm 34:8) “He reached down from on high and

took hold of me; he drew me out of deep waters,

rescued me from my powerful enemy. The Lord

was my support. He brought me out into a

spacious place; he rescued me because he

delighted in me.” (Psalm 18:16-19)

You lose, Pain!

— Marlyn Blount

Some Nights Are Like That

by Carol Gieg

It is three a.m. and I am wide awake. A familiar nausea tauntsme. I have assiduously ignored its warning the last half houror so before I lay down to sleep. I simply am not going toallow it to win this time. I am stronger than that.

Dream-littered slumber masks the further warnings of advancing troops up the right side of my head. They attack as an enormous wave of pain, progressing rapidly upward over the occipital ridge. The wave gathers reinforcements—more nausea and tears.

Fortified, they march without pause, directly towards the gripping stronghold of Trapezius. The troops surround andpress inward. Sweeping their guns skyward, they take aim and shoot. The shots ricochet throughout my head and lodgebehind my eyes. Satisfied in their mission so far, they pause to reload.

Fully awake now, I am livid. I grab for my temples andsqueeze shut my tearful eyes. True to form, I refuse to retreatand instead, dig in my heels. I shift my head from side to side,seeking respite long enough to plan my counterattack, anddetermined to defeat this evil force attacking my head. I planto fortify my own soldiers with those weapons best-suited todefend my precious tender soil from the marauders.

But it is no use. Sleep is no longer anywhere near a possibility.

Pain advances again until, finally, I order a retreat, surrender,and grab for my medication.

My lads and lassies break out the litters and begin loadingtheir wounded comrades, carrying them to medical attention. I am submerged again and again, leveled by shots of pain evenas my own soldiers attempt to stitch and mend me. Opposingtroops, as though to pour salt over the open wound of thisoverwhelming defeat, wave the flag of triumph emblazoned,“MIGRAINE.”

I call in reinforcements, take another medication, sit up orstand, take a walk, try natural vinegar recipes, ice packs, caffeine, and succumbing to nausea. Soon, all been spent. Now I can rest while my troops hold MIGRAINE at bay.

But I know the pain army will be back, once I recover enoughto fight again. As soon as I am caught unawares—too fatigued,too hormonal, too traumatized, too allergic, too emotionally-stressed, or too something I don’t know about yet—then willthe troops gather; then will the wave swell; then will theattacks commence.

Some nights are like that. | TOP |

14

Since 1980 the American Chronic Pain Association has provided peoplewho must live with daily pain a means to help themselves to a richer,fuller life. We are grateful to have the support of these corporate sponsors for our mission:

AMBASSADOR

Endo PharmaceuticalsLillyMillennium LaboratoriesPfizer

EDUCATOR

CephalonForest Laboratories Inc.Medtronic Inc.Purdue

BUILDER

AbbottArchimedes PharmaPriCara

Thanks to these corporations for grants that enables ACPA to fund special projects:

Endo Pharmaceuticals: For the Veterans In Pain (VIP) program.Supporting ten presentations on pain management, and peer-led groups in VA facilities, as well as a grant to film one of the presentations

Medtronic Foundation: Two-year grant for the Growing PainsInteractive Module

Millennium Laboratories: For a Pain Week 2011 exhibit opportunity

The Chronicle is published quarterly by the AmericanChronic Pain Association.

We welcome essays, poetry, articles, and book reviews written by people with chronicpain or their families.

Please send inquiries to:

The ACPAP.O. Box 850Rocklin, CA 95677

Executive Director:

Penney Cowa n

President,

Board of Directors:

David Provenzano, M.D.

Past President,

Editorial Director:

Nicole Kelly

Medical Editor:

Steven Feinberg, M.D.

Copy Editor:

Alison Conte

Special Features:

Erin Kelly

TributesThank You!

In Honor of

Arielle Gorelick

on her graduation

Given by The Shovers Family

In Memory of

Jeffrey Carl Reinking, MD

surviving spouse

Mrs. Robin Reinking

Given by Louis Kaufman

| TOP |

The ACPA is a peer support organization: we help each other learn to live fully inspite of chronic pain. Your membership, donations, and purchase of materials keepthe ACPA alive and reaching out to even more people with pain.